RA or LUPUS both bloodwork are negative ???

Amélie - posted on 02/01/2009 ( 12 moms have responded )

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Nice to meet everyone,

My name is Amelia, and I am being followed by a rhumatologist for about a 1 year now, I am on cortisone injection every 3 months, plaquenil, and for about 1 1/2 month on Meto.....

I would like to know if some of you have had the same problem, and what symptoms or problems made your DR. decide on your diagnosis, Do you all have + rhumatoid factor, or ANA+ for blood work? I think that lots of you look good, I have gain lots of weight since I started the treatments, has it happen to you, and does it go away after your body gets use to it ?



Thanks to everyone, for your time

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Nancy - posted on 01/22/2010

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I was diagnose with RA over 11 years ago. I have gained about 75 pounds since I have been on these RA drugs. Methotrexate pills, celebrex, plaquenil,steroids, humira pens 2 x a month, tramadol, naproxen and still have pain. I also have been diagnosed with no or very little arch in my feet and my lower back is deteriorating which doubles my pain sometimes. I hurt so badly that I have a hard time walking and with 2 teenagers who like to go shopping ect that can be very hard sometimes.

I had one liver specialist who checked me out for possible liver damage due to methotrexate tell me that I was too fat to have a liver biopsy. It may hurt me more than a normal person. Needless to say I refuse to have him do any testing on me at all.

The doctor who I see wants me to go on Remacaid but it would cost me a total of $3,000.00 to go on it. $2,000.00 out of pocket which would be impossible. We can't afford that kind of payment. Any one else have this kind of problem? What are you supposed to do to get meds that they want you to have when you can't afford them?

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Bernadette - posted on 12/05/2011

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hi Amelia, my RA factor was neg for about 3 years into my diagnosis, it is pos now and has been for past 12 years. Clinically it was decided i had RA ,I think an immediate family history, my mum had it as well, helped.the weight goes up and down , the more unwell i am the heavier I am, mainly due to no excercise.

Rachel - posted on 10/19/2011

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My ANA, RF, Jo1 autoanitboty ,THS, 13 point lupus and mixed conncective tissue disease titers were all negative. You can have sero neg arthritis that is inflamatory. Do you know if your sed rate or c-reactive protien is elevated? If so there is inflamation in your body wich is suggestive of an inflamatory or autnimmune condition.

A few sero neg conditions are Anklosing Spondilitis, Psoriatic Arthritis, and Reactive Arthritis (reitiers syndrome)

I had an elevated sed rate, c- reactive protien and elevated ACE enzyme and my diagnosis is sarcoidosis.

I have gained 40 pounds because of the steriods used to treat it. I finally got sick of gaining and went on a diet and started excersizing. I'm proof you can loose weight on treatment, its just very hard. I've lost 10 of those 40 pounds. hang in there!

Karen - posted on 08/22/2011

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I gained so much weight from the steroids I weened myself off of them with the help of my doctor and found I needed a much smaller dose than he had me on to feel good. After a while I was able to get off them completely but that was after visiting with a pain therapist clinic and exploring other options.

I also realized that after 18 months of continual sero-negative RA and ANA blood tests where no one could help me know what I was on, though they did expect autoimmune and had and still have me on plaquenil - not knowing had giving me situational depression. I'd never been a depressed person before, but my whole life changed and so I had become depressed without realizing it and it was causing physical pain additionally to my body. Things are no where near good but they seem brighter internally at least from this perspective now.

Sandi - posted on 01/22/2010

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I know where you are coming from! my ulcer meds is not on the "approved list" and the insurance I have will not add it or make an excemption. It would cost me 1000.00 a month it i took it once a day and of course I have to have it twice a day. I don't even begin to get that from ssd so forget it. I am so blessed that my GI doctor has my husband come by the office every 2 weeks and they provide me samples. If not I am sure my barretts would be cancer by now as it was so progressed.

So maybe ask the dr for samples ...explain your money situation. I think that is the hardest thing for me to do anyway is tell someone hey i don't have the money for the drugs. some drug companies will help you but you have to show need and they issume if you have a working spouse you should be able to get all your meds.. WRONG

Sandi - posted on 01/15/2010

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There are so many audio immune diseases out there that love to hang onto other ones. I have Sjogren's Syndrome, Fibromyligia, RA, been told I test postive for Lupus, Mirgranes constant for 8 yrs, pain in the arms, legs back etc.... the meds I take for all of the pain issues have given me an ulcer which in turn created barrett's esphogus. One thing leads to another and then to another. I went from a size 4 in college in the late 7os to size yes I will say it 22 now. Recently i have found 2 wonderful GI and RA doctors who work together on my meds so that they do not create more damage. I have no VIT D that shows up in my body even with months of high dosages daily. Low to no Vit D can cause your body to think you are not getting food so it holds onto what ever you eat. So you might ask to have your Vit D levels checked and of course your thyroid levels too the complete panel. One thing i have learned is my mind is so foggy... carry a list of your meds and your ailments with you at all times. You never know when you will need to show someone what you are taking or will need to ask for help. I no longer drive but can get lost in the store when i go with my husband. Fibro fogs and strokes can do alot with the mind. I just have to keep my mind active even if i can't get the body to go along with it.

HUGS and remember it always helps to come and talk with others who are going through the same things you are. YOU are NOT alone.

sandi

Jamie - posted on 01/01/2010

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I went undiagnosed for almost two years. The pain started in my back and then my wrists. I was in college at the time, taking online classes, because of my young children, which involved a lot of typing. My initial diagnosis was carpal tunnel syndrome. I was put on a medication called Lyrica, (which is for nerve pain) for a few months, and the pain did not subside. I was referred to a physiatrist, who did some bloodwork and noted that my ANA level was positive, but my rhumatiod factor was negative. I was told that I would have to see a rhumatologist, but it was hard to find a rhumatologist in my area that would take my insurance, because at the time I had a strange insurance, and I live in a rural area in Northern Michigan. As I was waiting for a rhumatologist, my pain escalated so bad I was forced to take oxycodone for my pain, and as a mother of a four and two year old, this was hard. After over a year, I finally found a doctor, and I was diagnosed with Ankylosing Spondylitis, which is a sister disease to RA and Lupus. AS is a disease that is primarily associated with your back, but often spreads to many other joints, as it did in my case. My spine is beginning to break down and fuse in my cervical vertabra, but hopefully, we can slow that progression down before I become paralyzed. I am on Vicodin, Sulfasalazine, and Relefen for the pain and stiffness. My pain is somewhat controlled, but it scares me.

Andrea - posted on 02/16/2009

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Don't forget to remind your doctor once in awhile that she works for you and she has probably never had to do anything with constant agonizing pain in her life.  I hate it when I hear crap like that about doctors.  I have been a size 12 to 22 and I can honestly say that it has never improved my pain to lose weight.  Maybe my self image and stamina but not the pain.  I have found that different sizes present different problems physically for me.  When I'm my thinnest every inch of me hurts when sitting or lying down because there is no padding.



Anyway, that's my two cents and it gets better as you learn to live with the body you're in, don't let your doctor be a bully just because she wears the white coat.  You are the boss of you!!!!!



have a great day with your kids...Andrea

Amélie - posted on 02/03/2009

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Thank you everyone,



I am happy to see that, some of you thinks the same way I do, about weight and being able to feel and being able to move around  especially with the kids, it's just that my family doctor tells me that I am to fat everytimes she sees me, and that I can have more troubles later on in life(Of course she does not have a inch of fat on her body!!).



Other then RA-or lupus and a very bad hip(car accident) I am Healthy and I decided that I will do everything (meds, injections, treatments,weight gain, hair loss ect...) I can do to be able to enjoy my kids and bring them all they need now and 'till they're grown, since they are what I live for. If I get more  health problems when I am older due to my weight or whatever else it won't be as much important then, I rather enjoy life now when they need me the most then when they'll have move out and have they're own family ...



I am really happy to be able to share with you guys, it makes my feelings more real, now that I see I am not the only one thinking that way..



 

Andrea - posted on 02/02/2009

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Hi Amelia, I'm new here and haven't introduced myself yet but I saw your post and wanted to share some info in case it wil help you.  Has your doctor tested you for Sjogren's Syndrome?  It's one of the immune disorders like lupus and ra if you haven't heard of it but it acts differently and reponds to different treatment.  I was diagnosed with lupus at 17 and it has come and gone throughout my life but I got really sick 18 months ago and wasn't responding to lupus treatment.  I went to a new Rheumi who tested me for Sjogrens and I have it.  She's not saying I don't have lupus but the test for Sjogren's is difinitive.  You either have it or you don't.  It's worth ruling out because the change in treatment made a huge difference and I am so much better than I've ever been.  Your doctor should know what to test you for.  I hope that helps.



Hang in there, it gets better.



Andrea

Amanda - posted on 02/02/2009

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My blood work has never showed the rhumatoid factor but they diagnosed me RA anyways. I gained weight on predisone for sure but the Plaquenil make me feel kind of sick all the time so I was lucky and lost what I had gained. Same as Jacqueline for me, would rather be heavy and able to walk. Maybe if the metho kicks in you can stop the shots and that will help with the weight.

Jacqueline - posted on 02/01/2009

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I went undiagnosed for about 4-5 months, however,  my RA factor was 133, so they had a pretty good idea that I was dealing with RA.  They were just working to rule out everything else.  Despite my picture and how "good" I look, I did put on about 50 pounds very rapidly due to steroid injections (like you get) and oral steroids.  I am currently only injectible methotrexate weekly and it seems to be working for the time being.   Unfortunately, the weight does not magically disappear.  Also just as unfortunate is the fact that medicinal weight seems to be very hard to take off, especially if you're dealing with something as harsh as chronic pain which makes a lot exercises intolerable.  Given the choice, however, I will always choose to be fat if it means I can still walk.

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